Maintenance Dose

377 days.

That’s the total number of days between the date my son was first prescribed psychiatric medication and today. In those days the type of medication has changed 3 times and the dosages have been adjusted 7 times. And today, on day 377, the psychiatrist sat across the desk from us and told us that he thinks the current medication combinations and dosages are solid. We’ve hit the sweet spot of “maintenance dose”.

Our decision to medicate is not something I have talked or written about very much. The path that finally led us to the our son’s psychiatrist and that first dose of medication  377 days ago, was long and twisted. Some parenting decisions are easy and clear-cut. The decision to medicate was not one of those.

While I am fairly open on the blog and in person about our story, I am careful to not over share. Specifically I leave out the parts of the story that are too raw or personal. Truly that means I often leave out the specifics of behavior and the grittiest of the details.  These are the things that if you have not lived through, you may not even be able to imagine or consider as possibilities.  Leaving out those details is necessary to maintain some dignity for the people involved, but it also means most of the world is only getting a portion of the story. It is challenging to talk about the “how” we got the decision to medicate, while also maintaining that balance of not over sharing. But perhaps by sharing even a part of this yet untold story, those who do find their family in a similar situation can read enough between the lines to know they are not alone in the difficult decision of to medicate, or not.

I can’t really put my finger on the why of this – but for a long time I was staunchly against medication. I absolutely had concerns about side effects, and although I never articulated it I also had concerns about stigma associated with medication. I was willing to try any other possible intervention – counseling, behavioral therapy, diet and routine changes, homeopathic and alternative therapies. And we did try them all. We exhausted all the other possible interventions. But none of them made a dent in the problem. In fact, in the time we were cycling through my “anything but medication” approach, our family became hostage to my son’s increasing anxiety and depression and the behaviors that accompanied the anxiety and depression.

By the time we made the decision to medicate (actually by the time I finally got there, my husband was ready months before I was), the anxiety had eroded the joy my son once exuded. His anxiety was so high and so persistent that he was barely able to function in the world.  The behaviors that accompanied that anxiety were holding our family hostage. He was in pain and in crisis, but we all were suffering.

I can recall with absolute clarity the moment I knew I was wrong and that medication was a necessity. It was the day he had a panic attack so debilitating he sank to the floor in the middle of a group of people at the Monterey Bay Aquarium. The site of him shaking and crying on that floor is an image that will never leave me. So by the time we met the man who would become our son’s psychiatrist 2 weeks later, when he asked if we would consider medication my answer was an emphatic yes.

And so 377 days ago he started medication. 377 days ago he would not look at the psychiatrist, let alone speak to him. Today as we sat in the psychiatrist’s office, my son looked him the eye and was (mostly) able to answer questions about how he is feeling and what he is thinking. He even laughed at one point, and was clearly excited and hopeful as he talked about the summer camp he will attend this year. He was a completely different kid sitting in that room today, than he was 377 days ago. So much of that can be attributed to the medication.

And so we have reached a “maintenance dose” – for now at least. He will grow and his hormones will kick in – both can wreak havoc with the delicate balance the medications provide. Or some yet unknown and unforeseen life change could amp his anxiety levels – that could also wreak havoc with the delicate balance the medications provide. I still worry about potential longterm side effects, but 377 days into this particular part of our journey I do not doubt that medication was and continues to be a necessity. The medications do not provide a cure, nor are they absolute. They do help to create the space for him to learn to handle the world. They do establish enough balance for him to engage with the world on his own terms. And they have brought enough peace that there is joy once again in his eyes and in his laugh. And for that I am thankful.

 

In Case of Emergency

Yesterday was the first day of school. And predictably at the end of the day the kids came home with the stacks paper – some of it actually needed my attention, and much of it went straight into the recycling pile.

Among the items that needed my attention was the reminder to send in an emergency kit for each child. Living in CA, emergency prep means earthquake prep. Our school district requires each child have an emergency kit supplied by the family that includes basic essentials for up to 48 hours.

There is an option to either purchase a pre made kit from the school, or supply your own. I purchased the kits for both kids when they were in kindergarten and we just re-use them each year, restocking when perishables hit their expiration date. So as I was going through the folder full of paper my son brought home and saw the notice listing the items that should be included in an emergency kit, I almost didn’t look at it as I moved it the recycling pile. But then a hand written note on the side of the page, and I paused to read what it said.

The note had been written by my son, “Include 48 hours of anxiety medication in emergency kit.”

I asked my son if his teacher had told him to write the note, and he said no. It was his idea.  He told me, “My medication only works if I take it every single day. If something happens and I get trapped at school, I want to have my medication there.”

I was momentarily stunned.

I asked if getting trapped at school was something he worries about, “No Mom. I do worry about a lot of things, but not about this. But we do live close enough to the San Andreas fault that a major earthquake could happen. If it happens while I am at school, I want to know I have everything I need until you can get to me. The roads could be really messed up. It’s possible that I could have to spend a night at school.”

Ok. So he wasn’t worrying. He was being practical. And that means as much as he loathes going to the psychiatrist and to the psychologist, he knows that the medication is helping him. He still won’t really talk to us about what he is feeling or experiencing, but he told me so, so much when he said “My medication only works if I take it every single day. If something happens and I get trapped at school, I want to have my medication there.”

With those two sentences, he told me he knows how far down he had spiraled before starting the medication, and he told me he feels better on the medication. With those two sentences, he told me he knows he needs to do the work to help himself. With those two sentences, he told me he is beginning to self advocate. With those two sentences, he gave me hope.

Clearly I do not want to see a day when there is an emergency so massive that he does get stuck at school, but if that day comes he will be prepared because he was brave enough to acknowledge his truth.img_6020

 

 

Once Upon A Time…

growing_upOnce upon a time, there was a 10 month old baby boy who took his first assisted steps up and down the aisle of a church during Vacation Bible School week. The hands he held were those of a sweet little girl who would grow up to be one of his favorite baby sitters, as his mother was busy teaching music to the other children.

Once upon a time, there was a not quite 3 year old boy, who splashed in the water left over from VBS games along side the other toddlers of the church and left a permanent dent in his forehead when he collided with a pew.

Once upon a time there was a not quite 4 year old boy who finally got to be with the “big kids” during VBS. He decided he was “too hot” during a music performance for family, and started to strip naked in front of everybody. All while his mother looked on helplessly since she was in the midst of directing the musical efforts of all the other children.

Once upon a time, there was a preschooler, who grew to become a young elementary aged boy. This was a boy who loved VBS and looked forward to the week every year. This was a boy who excitedly waited for the day his parents would add the latest round of VBS music to his iPod.

Once upon a time there was a 9 year old boy, who still loved VBS, but no longer loved being around people. He spent all day every day begging his mother to let him leave, but his mother was in charge and so he was “stuck”.

And now there is no more once upon a time.

Now we are in the here and now. Now there is an almost 11 year old, teetering between childhood and adolescence. Now we are in our current reality, where so many safe places, and loved activities have been stolen and buried under the weight of anxiety, panic & depression. Now we are halfway through a summer where that boy has only been able to attend one week of day camp, because the world is still more than the can handle most days. And now we are halfway through VBS week.

We’re halfway through VBS week, and my son has been there as a helper every day. Three days in and he’s doing great. He’s not the best helper ever, but he’s doing the best he can and the adult he is helping understands his situation and is doing everything she can to help him have a successful week. He is doing such a good job of avoiding the large crowds of kids and adults at the opening and closing times, that one adult I spoke to today didn’t even realize he’d been there all week. But he’s there, and he’s enjoying being there.

I am confident that as recently as two weeks ago, he would not have been managing as well as he is this week. With every day that passes, I am beginning to see that the current combination of medications may actually be doing the job they are supposed to be doing. The hard edges are softer and the things that trigger him are fewer. I have seen glimpses of joy, and laughter, and peace in my boy this week. I have seen glimpses of that that boy who once loved VBS more than any kid I have ever met.

Once upon a time there was a boy who grew up in a church, and loved everything and everybody inside that building. Once upon another time, the darkness of anxiety, panic, and depression made that church and it’s people feel unsafe to that boy. Once upon another time, with the help of his family, that boy fought back and reclaimed the joy the church once gave him. I know we’re not anywhere close to a happily ever after, but seeing my son smile again as I work through VBS has been an amazing blessing.

Back on Track to Black

My son began training in the martial art of ninjitsu when he was 7 years old. From the very first lesson he loved it and was hooked. By the time he had trained long enough and showed enough mastery of technique to advance to his second belt, he had declared his intent to become a black belt. The Timehop app on my phone was kind enough to remind me this morning that the day he made that statement was exactly 3 years ago today.

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Ordinarily, seeing a reminder like that would have been an “aww, I remember that” sort of moment. This morning, however, that memory was perfectly timed to be a saving grace.

For a long time, the dojo was one of my son’s few “safe places.”  Even when he was having major anxiety and panic attacks most other places in his life, the dojo remained a safe place. That all changed  at the beginning of June when he had the first of several panic attacks at the dojo. The panic attacks were followed by doubts and anxiety about his physical ability to train and worry about what the sensei, instructors and other kids would think of him. The dojo no longer felt safe and he began to have panic attacks just thinking about having to go there. He declared his intention to quit.

Since the very thought of the dojo had become a trigger for him, we decided to let him take a break. He missed most of the month of June and the beginning of July – including a rank test and a belt test that would have advanced him to brown belt (2 belts away from being a black belt).

Over the weekend, my husband and I decided that this was the week we were going to try to get him to return. He’s been on his new medications for almost 3 weeks, and while he still has high levels of anxiety and there are still panic attacks as well as episodes of anger and depression, in general he is steadier than he was back in June. We knew that the longer he stayed away from the dojo, the harder it would be to get him back. We also knew that even if he said he didn’t care anymore about earning a black belt, he didn’t really mean it.

So yesterday there were several conversations about today being the day he would go back. He wasn’t on board. There were tears, mild panic, and anger. He continued to declare his intentions to quit. And right when I thought we might not ever convince him – we went with a minor bribe.

He had been asking for permission to buy a couple of graphic novels for his Kindle, and we had not allowed it. The possibility of purchasing those graphic novels was enough of a carrot last night, that by the time he went to bed his screaming protests had mellowed into quiet sighs. This morning he asked if he could still get the books if he went to class this afternoon. I told him yes, and then I showed him the picture from Timehop. I reminded him about the goal he once set for himself, how much love he has for ninjitsu, and how far he’s already come toward meeting his goal. And then I prayed he would be able to make it to the dojo and through his class without having a panic attack.

He went. He was nervous, but he went. He made it through class, and at one point was even laughing with his training partner. He did it! And he’s talking about the “next class”. And he asked if I had been able to reschedule his missed belt test. He’s back on track to black! (And at this very moment sitting on the couch devouring the 2 graphic novels we purchased as soon as we got home from the dojo!)

It Might Be Time for a Dream Catcher

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When I was 11, my grandfather had a brain aneurysm rupture. He was hospitalized for days before he died. The entire time he was in the hospital, I had a horrible dream each night that a masked man with a gun was threatening to shoot every person in my extended family. That dream was my adolescent brain’s way of dealing with the intense emotions surrounding the loss of a loved one. Eventually there was a night where I did not dream that dream.

When I was 26, I was stopped at a stop sign in a shopping center parking lot and a man on a bike rode right into the front of my car. Then he picked up that bike and threw it through the windshield of my car, came around to the driver’s side and began threatening me. Bystanders had to physically pull him away from me. Following that incident, I had intense, dark and really frightening dreams that were a byproduct of PTSD. Eventually there was a night where those dreams did not come.

Recently, I have been having dreams where my son is somehow not safe and as hard as I try I am not able to protect him from a threat (sometimes he has been taken away and I don’t know where he is, sometimes there is somebody trying to hurt him and I can’t get him to safety). These dreams are clearly a result of the fear I feel when I send him out into the world each day. Every morning, I take a deep breath, put on my brave face, send him out into the world, and then spend the rest of the day praying he makes it through without a panic attack or an anxiety fueled angry outburst. Some days are fine, some days are awful. There is no way of really knowing which way any day will go. So every night, I lay in bed and pray that the next day will be one of the good days, that the next dosage increase to his anxiety medication will be the one that works, that the next psychologist appointment will be the one where my son finally decides to talk about what he is feeling, that, that, that….

And eventually I sleep.

I know that eventually there will be a night when those dreams will not come. Eventually.

In the meantime, it may be time to hang a dream catcher in our room to help me hang onto the good dreams.

Ripping Off The Bandaid

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These are the lessons I have learned since deciding rip off the bandaid to share both my son’s diagnoses,  and our family’s journey,  with the world.

  1. A “label” isn’t always a bad thing –  We spent a long time not wanting to “label” our son, and therefore were not straightforward with him, ourselves or others. This came from a place of trying to protect him from the big, bad world, but in the end actually made him (and us) more vulnerable. The day we sat him down and for the first time had a conversation that included the words autism spectrum disorder, anxiety disorder, panic attacks, and medication, was actually a good day. We gave our son the words to begin to understand and talk about what he is struggling through. There is both both knowledge and comfort in the labels.
  2. We are not alone – In the first minutes of linking this blog to my Facebook page, I received private messages from 6 different people talking about their own, or their child’s, experiences with anxiety, panic, depression, sensory processing, and autism spectrum disorders. Within minutes I went from feeling like my world was very small, to realizing that my world was big, and wide, and there are loving arms to hold us up when the burden seems too great. There have also been people who my son admires deeply, who have come to me with their own stories of struggle. Being able to share those stories with my son, along with the knowledge that these are adults who both care about him and can understand what he is experiencing has made parts of his world a little less frightening.
  3. Being honest, doesn’t guarantee universal understanding – Most people have been amazing, supportive, and understanding. Most, but not all. I have come across skeptics and naysayers. These are the people who even after hearing the diagnoses, still say “but he seems fine,” or “are you sure?”, or “he’s just going through a phase.” No, no, and NO! I am thankful that the amazing, supportive, and understanding people far outnumber the skeptics and naysayers.

Ripping off that band aid was hard. But we did it. It stung a little, but mostly there has been fresh air. And there is so much healing to be found on the other side.

 

 

 

 Hope (& Prozac) for the Journey

Last Thursday, we were here. And we were scared and lost and looking for even a glimmer of hope.

Today, my husband and I were back at the psychiatrist’s office to discuss his thoughts on diagnosis and treatment. We didn’t actually find out anything we hadn’t already been told or suspected. His diagnosis was confirmation of autism spectrum disorder level 1 and generalized anxiety disorder. He also added the “sub” diagnosis of panic disorder, said he will also be evaluating for depression as we move forward and pointed out that all of the above is exacerbated by our son’s high intellect.

So we have a confirmed diagnosis, we have a treatment plan, and we have a treatment team who we FINALLY feel understand exactly what our son and our family struggle through. We have hope.

We have hope, and we have a prescription for prozac. We have hope and we have the words to explain to our son what is happening inside his brain and body. 

As I was waiting at the pharmacy for the prescription, I was texting with somebody who had asked me to let him know the outcome of the appointment. In one of those texts I said that I felt like I had finally exhaled for the fist time in weeks. There is great relief in being able to name what he is experiencing. 

So I’ve exhaled. My husband and I have hugged each other tight. Tonight we’ll give our son the words to name his struggles and tomorrow we’ll open the bottle of Prozac.